Ependymoma Awareness Day 2020

Ependymoma Awareness Day 2020

Patients, caregivers and medical professionals from around the world dedicated May 3, 2020, as the ninth annual Ependymoma Awareness Day!

For the past four years, Ependymoma Awareness Day was held in May during Brain Tumor Awareness Month and has been included as a part of the National Brain Tumor Society’s Head to the Hill activities.

Because of COVID-19, the CERN Foundation shifted from a live butterfly release and presentation to virtual activities. We encouraged our community to participate and create Ependymoma Awareness Day activities from their home and share those activities with others. We adopted the mindset, Create and Connect, to inspire the virtual activities. Create ependymoma awareness and connect our community to resources and each other. Our community purchased over 150 t-shirts, colored and displayed their own butterflies using chalk or our coloring sheet, created origami butterflies, and donated to the 2020 Ependymoma Awareness Day campaign. View the photo gallery

We released inspiring videos from members of the ependymoma community all day on May 3 from 9:00 a.m. to 9:00 p.m. on the CERN Foundation Facebook page. There were over 15 videos from our community featuring families and CERN advisors from all over the world. One of these videos included a live butterfly release from Kimberly Wallgren, President of the CERN Foundation. “Our stories unite us despite our differences. Regardless of our age or diagnosis, we share similar hopes and dreams when it comes to our future and the future of our loved ones,” shares Kim. We were able to reach over 30,000 views and made numerous connections and relationship interactions between members of our ependymoma community. View the community videos.

Instead of a mass release, butterflies were released at individual homes of speakers and supporters to honor loved ones with ependymoma, caregivers, medical professionals, and to remember loved ones. Donor messages were also handwritten on white paper butterflies and placed in a blooming tree as a visual representation of support from the community. The delicate and beautiful butterfly was chosen to represent the spirit of the ependymoma community as a symbol of hope through change.

A compilation video was created to summarize the events of the day and can be viewed here.

The momentum and energy of the day was truly remarkable, thanks to your support! The virtual activities garnered support from around the world, telling stories that echoed the importance of seeking care at specialized institutions, participation in clinical trials, and connecting with each other for support.

With your generous support, our 2020 Ependymoma Awareness Day campaign has raised over $30,000 to go towards the Ependymoma Fund for Research and Education! The fund will help people with ependymoma and advance ependymoma research toward the development of new and better treatments. There is still time to support the Fund if you haven’t yet had a chance yet!

Support CERN

The CERN Foundation would like to thank everyone who participated and supported this event. CERN is especially grateful to the National Brain Tumor Society for allowing us to hold the butterfly release during their Head to the Hill event. Read about the success of the Head to the Hill event thanks to all of the virtual participants.

Please feel free to share your experiences with us and submit information and pictures of your Awareness Day activities so that we can feature them on our website, giving inspiration and direction to others as they get involved in Ependymoma Awareness Day!

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